After a pain flare, I remind myself to be grateful for the good days

Last week when I finally caught up with my massage therapist, Kim, after a six-week break — I was sick, then she was — I told her she’d get to play a game called “Pick Your Train Wreck,” which had her laughing hysterically. Thanks to my Ehlers-Danlos syndrome (EDS), we both knew I’d be a mess, after such a long break and the way I felt. The question was which train wreck she wanted to work on first.

The massage was extra long and rather painful. Kim worked on the knot in my calf, from when I fell into the tractor bucket after being attacked by a rooster. (That’s farm life for you!) The back pain I’ve been experiencing, in classic EDS fashion, was likely a result of how I’d been walking with the leg pain, as well as the usual issues from my troubled shoulder traveling down my body.

The calf massage helped. But when she started working on my back, I realized just how bad of a pain flare I was experiencing.

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How I process pain

Even though I knew a flare was happening and everything that entails — pain (obviously!), fatigue, and stress — I was still somehow shocked at how sore I was when Kim worked on me. It’s baffling to me that even when I know I’m in a bad place physically, I often don’t recognize just how much pain I’m experiencing. I assume that’s because I’m used to it. Over the years I’ve learned to cope by mentally blocking out the pain, but I still know it’s there.

Recently, I’ve been going to bed early because I’ve been exhausted. Despite that, I’ve woken up each morning as tired as I was when I fell asleep the previous night. The day after my massage, however, I woke up feeling rested for the first time in weeks. I didn’t feel like I’d need a crane to get me to my feet or that I had to force my eyes to stay open. I didn’t even feel like the same person who’d woken up the day before my massage. I felt better, and that was amazing.

That feeling alone can set the tone for the day. It’s so much easier to start out on a good note when I wake up feeling well.

Pain isn’t just physical; it affects my mental state, too. I learned long ago that when I’m hurting, I tend to feel more anxiety. The two are related, at least for me, and knowing that has helped me manage both over the years. When I feel my stress or anxiety ramping up when I’m in a pain flare, it helps to remind myself that I know where it’s coming from and that I need to take a deep breath. And while that’s a help, I’d rather just be feeling better and not anxious in the first place!

It’s such a relief to feel better after my massage. I have more energy, I can get moving more quickly when I wake up in the morning, and I’m less stressed, all of which makes for easier days.

I have days when my EDS is hard to handle. But it helps me to remember that good days will follow, even if it takes time. And when the good times come, they’re pretty dang awesome.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.